Monthly Archives: June 2009

Mediums and music help support Sarah

CLEETHORPES Memorial Hall hosted an afternoon of music and mediums to raise money for the Sarah Brade Appeal.

As reported, Sarah, 30, a former Franklin College student, suffers from Complex Regional Pain Syndrome, a rare condition that has caused her severe pain every day for the past 12 years.

She has undergone several operations in this country, including having her bladder removed, and tried drug regimes and complementary therapies, but nothing had brought her relief.

In April, her mum Sue Key, of Waltham, launched an appeal for donations to help pay for a groundbreaking treatment in Mexico, which Sarah believed was her only chance of relieving the crippling pain.

Sarah underwent the coma therapy treatment, which involved inducing her into a coma and injecting her with a high dose of ketamine, on May 14, but it is not yet known if the procedure has been successful.

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However, her family still needs to raise money to cover the cost of the treatment – which was about £23,000 – as well as follow-up assessments, air fares and accommodation. It is estimated the full cost could come to about £40,000.

Since the Grimsby Telegraph highlighted Sarah’s plight in April, around £300 has been donated to the appeal.

However, as more is needed, two of Sue’s friends, Denise Sheard and Dr Val Cowan, organised the fundraising event at the Memorial Hall.

The afternoon featured performances from choir Singing For Pleasure, flute player Keith Duke, and readings by three local mediums Jim Cork, Hazel Abbey and Tony Francis.

Denise, who owns Classic Model Trains And Cine Shop in Cleethorpes, along with her husband Phil, said: “One of the mediums, Jim Cork, is a friend of mine and it just struck me that together he and Val’s partner Keith Duke would make for a lovely afternoon’s entertainment.

“There are lots of people here today who have given their time and we are grateful to them all.”

Dr Cowan said: “Can you imagine living the rest of your life in severe pain? That is what Sarah faced without this treatment.”

Medium Jim Cork, from Grimsby, said: “I have been working as a medium at events like this for local causes for a long time and Sarah’s case pulled at the heartstrings more than most.”

Can you help?

If you would like to support the Sarah Brade Appeal, call Denise on (01472) 697334 or Dr Cowan on (01652) 680523.

It’s a mysterious disease that has torn apart this high school junior’s world.

Strange that a life of pain could overcome someone like Connor. For most of his life, he was impervious to the stuff.

The youngest of a family with four brothers and a sister, he was often at the losing end of play. Sometimes he’d be the ball in a game his siblings called “Connor Football.”

“I could fall on my head, get up and laugh,” he recalled.

When he was 13, he broke his left leg as a Babe Ruth catcher — his leg got stuck in the backstop as he chased a wild pitch.

At 15, he broke his left foot sliding into what turned out to be a concrete second base. He even finished the game that time.

“We’re kind of a ‘tough-it-out’ kind of family,” said his mom, Rosemary Menneto.

Today, Connor’s CRPS sounds like hell manifested into the length of a single limb. At its worst, a drop of water would amplify the pain from powerful to unbearable. The breeze of a person walking past his bed created spasms of agony.

After all those years of competition, Connor’s greatest opponent became his own body.

CRPS, first discovered in the Civil War, is still barely understood. But it’s known to come about after multiple injuries to an extremity — such as the breaks in Connor’s leg.

Like the phantom sensations experienced by an amputee, the disease causes the brain to send out pain signals for trauma that doesn’t exist. And the pain is far worse than any trauma might be.

In Connor’s case, the pain was so great that morphine and even an epidural — anesthetic inserted directly into the spinal cord — had no effect.

“He’s been treated rather aggressively,” said Dr. Charles Argoff, director of the comprehensive pain program at Albany Medical Center. “He’s been rather difficult to control from the very beginning.”

In March, doctors put Connor in a five-day “drug coma,” using the anesthetic ketamine. The idea was to reset his brain — teach it that his limbs were fine.

Connor awoke without pain. But agony was back a week later.

“It’s a challenging syndrome to try to control,” Argoff said. “It’s almost as if the brain thinks pain is normal.”

And it got worse. On May 27, the disease spread to his arm.

Connor doesn’t do much these says. He spends most of his time sitting on the couch, sweatpants rolled up so the fabric doesn’t touch his left leg. He loves playing sports video games, but can’t because of his arm.

Now, he mostly watches car shows on TV or designs his own sports cars on a sheet of paper.

He takes 10 different medications a day, which he says keeps his pain at a “9,” one level below the top of the scale.

“The difference between a nine and a 10 is huge,” said Connor, who describes his worst days as “off the chart.”

“But nine is still…” he said, trailing off. “It’s hard to imagine living life at a nine. I don’t even want to think about it.”

In the afternoons, his mother takes him to therapy, swimming and putting weight on his leg. Doctors say the only way he can regain control of his body is by using the limbs that hurt so much — to force the brain to accept that they’re OK.

During a recent afternoon at Sunnyview Rehabilitation Hospital in Schenectady, he tossed rings onto cones, under the watchful eye of a therapist. He sweated freely despite the relative ease of his task.

But he was concentrating not on the pain, but the sport of it — raising his arm in victory when he landed one, muttering “aww” when he missed.

The family is in the midst of raising $26,000 to send him to the Cleveland Clinic Children’s Hospital, which has a three-week program for CRPS victims. Family insurance won’t pay for the treatment there.

The long-term prognosis differs, even there. Some patients can escape their pain, while others only experience a reduction. And a relapse is always possible, according to program director Gerard Banez.

“What we aim for is a return to normal activity despite pain,” he said. “If kids work hard here and continue the work at home, they will return either to normal activity or close to normal.”

Connor says he continues to be optimistic.

“I really relate this to sports,” he said. “Call it the ninth inning or the fourth quarter or the third period in wrestling. But it’s a time when you’re either going to win or lose.

Like this:

This story, which ran in Sunday’s paper, is not exactly an outdoor story. It’s a story of an athlete whose latest opponent has become a frightful pain disease that threatens to ruin his life. Anybody who excels in the outdoors can certainly relate — especially anybody who’s had to stay home due to an injury.

It seems Connor Menneto never met a sport he didn’t like.

Baseball was his favorite. He started at T-ball and moved on to Babe Ruth and the Bethlehem High School Eagles.

But he also shot baskets for Holy Cross parish, played football at Bethlehem and wrestled at the Colonie Youth Center. In winter, he snowboarded.

“That was my life,” the 17-year-old Delmar resident said. “Sports.”

Now, Connor has been benched. It might be for life.

It began Jan. 9. He was walking to work at Four Corners Luncheonette. And, inexplicably, his left leg started to tingle.

Then hurt.

Then burn.

Four hours later, Connor was in agony.

“I couldn’t stand on it,” he remembered. “I couldn’t touch it.”

It took some work to find out why. X-rays, an MRI, blood work. Tests for blood clots, leukemia, Lyme disease, sepsis. Nothing.

It’s a mysterious disease that has torn apart this high school junior’s world.

Strange that a life of pain could overcome someone like Connor. For most of his life, he was impervious to the stuff.

The youngest of a family with four brothers and a sister, he was often at the losing end of play. Sometimes he’d be the ball in a game his siblings called “Connor Football.”

“I could fall on my head, get up and laugh,” he recalled.

When he was 13, he broke his left leg as a Babe Ruth catcher — his leg got stuck in the backstop as he chased a wild pitch.

At 15, he broke his left foot sliding into what turned out to be a concrete second base. He even finished the game that time.

“We’re kind of a ‘tough-it-out’ kind of family,” said his mom, Rosemary Menneto.

Today, Connor’s CRPS sounds like hell manifested into the length of a single limb. At its worst, a drop of water would amplify the pain from powerful to unbearable. The breeze of a person walking past his bed created spasms of agony.

After all those years of competition, Connor’s greatest opponent became his own body.

Standing with his mother, Connor Menneto takes a break from painful therapy.

CRPS, first discovered in the Civil War, is still barely understood. But it’s known to come about after multiple injuries to an extremity — such as the breaks in Connor’s leg.

Like the phantom sensations experienced by an amputee, the disease causes the brain to send out pain signals for trauma that doesn’t exist. And the pain is far worse than any trauma might be.

In Connor’s case, the pain was so great that morphine and even an epidural — anesthetic inserted directly into the spinal cord — had no effect.

“He’s been treated rather aggressively,” said Dr. Charles Argoff, director of the comprehensive pain program at Albany Medical Center. “He’s been rather difficult to control from the very beginning.”

In March, doctors put Connor in a five-day “drug coma,” using the anesthetic ketamine. The idea was to reset his brain — teach it that his limbs were fine.

Connor awoke without pain. But agony was back a week later.

“It’s a challenging syndrome to try to control,” Argoff said. “It’s almost as if the brain thinks pain is normal.”

And it got worse. On May 27, the disease spread to his arm.

Connor doesn’t do much these says. He spends most of his time sitting on the couch, sweatpants rolled up so the fabric doesn’t touch his left leg. He loves playing sports video games, but can’t because of his arm.

Now, he mostly watches car shows on TV or designs his own sports cars on a sheet of paper.

He takes 10 different medications a day, which he says keeps his pain at a “9,” one level below the top of the scale.

“The difference between a nine and a 10 is huge,” said Connor, who describes his worst days as “off the chart.”

“But nine is still…” he said, trailing off. “It’s hard to imagine living life at a nine. I don’t even want to think about it.”

In the afternoons, his mother takes him to therapy, swimming and putting weight on his leg. Doctors say the only way he can regain control of his body is by using the limbs that hurt so much — to force the brain to accept that they’re OK.

During a recent afternoon at Sunnyview Rehabilitation Hospital in Schenectady, he tossed rings onto cones, under the watchful eye of a therapist. He sweated freely despite the relative ease of his task.

But he was concentrating not on the pain, but the sport of it — raising his arm in victory when he landed one, muttering “aww” when he missed.

The family is in the midst of raising $26,000 to send him to the Cleveland Clinic Children’s Hospital, which has a three-week program for CRPS victims. Family insurance won’t pay for the treatment there.

The long-term prognosis differs, even there. Some patients can escape their pain, while others only experience a reduction. And a relapse is always possible, according to program director Gerard Banez.

“What we aim for is a return to normal activity despite pain,” he said. “If kids work hard here and continue the work at home, they will return either to normal activity or close to normal.”

Connor says he continues to be optimistic.

“I really relate this to sports,” he said. “Call it the ninth inning or the fourth quarter or the third period in wrestling. But it’s a time when you’re either going to win or lose.

Like this:

By SETH AUGENSTEINsaugenstein@njherald.comSPARTA — A burning pain shoots up the arm and shoulder of Doreen Berg.She describes it as sticking a finger in a electrical socket, and then lighting a fingertip on fire.The pain’s not a single, senselessly self-inflicted injury; it’s an everyday, chronic occurrence for Berg in the past four years.

In January 2005, Berg slipped on black ice, upending herself, tearing her rotator cuff and leaving her bicep “hanging by a thread.” She had the surgeries to repair what had ripped in her body, and she worked at recovery. The muscles healed, but the true recovery never came.

“After the surgery I was not getting better — and the pain was getting worse,” she said.

The former aerobics instructor eventually was diagnosed with reflex sympathetic dystrophy syndrome, or RSD. She had never even heard of the affliction, and didn’t understand its full import until she looked up the complex-sounding symptoms online, and until she began to feel the characteristic, burning pain of RSD.

The syndrome is not completely medically understood. It’s basically a malfunction of the nervous system. Most people unlucky enough to have Berg’s injury will feel pain, but the nerves eventually will stop flashing pain signals to the brain once the healing process is finished. In RSD patients, they don’t, and doctors don’t know exactly why.

Essentially, Berg continues to feel the effects of her fall four-plus years ago.

According to the Reflex Sympathetic Dystrophy Syndrome Association, any number between 200,000 and 1.2 million Americans suffer from the condition — and may follow as many as 5 percent of all nerve injuries. The syndrome even can follow a simple ankle sprain. Often, it goes undetected for a painfully long time; people with the disease see an average of five physicians before they are diagnosed.

Berg’s injuries were more serious than a routine sprain, but they were wounds that, given time, normally heal enough to avoid constant, lingering pain — at least when the right steps toward healing are taken.

She’s had several procedures — removing scar tissue from her shoulder, 16 separate injections in the sensitive nervous system locus of her stellate ganglion, a bicep transfer to strengthen her tendons, ongoing infusions of ketamine — a strong tranquilizer — every six weeks. Simple balms and ointments do little but distract from the constant transmission of burning pain. A litany of medications have done nothing to dull the relentless pain.

“I’ve been on and off nearly every medication you can think of,” she said.

Of course, she also keeps active as much as possible. Although she needs some help with household chores, most notably vacuuming and mopping, she keeps pushing her body to its maximum effectiveness. Berg also walks at least six miles each day.

She’s also taking her daily walk for the greater cause, as well. On June 28, she will be a part of the Achilles Walk for Hope and Possibility in Central Park for the second year in a row. She will walk the five miles to raise money for various causes, perhaps the closest to her heart being the Reflex Sympathetic Dystrophy Syndrome Association and its push for a cure to the baffling disease.

In the meantime, the daily pain continues for Berg. She continues to work part-time at a doctor’s office. This week she departed for Northwestern Memorial Hospital’s pain clinic in Chicago. She’s applying for a month-long boot camp of sorts plotted to help people cope with unrelenting pain without the crutch of medications. Berg said she’s hopeful about what the future holds, including the possibility of a cure.

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Journalists win awards in Garden State Journalists contest

Staff members of The Progress, Caldwell College and New Jersey Business were among the winners at the 62nd Annual Memorial Journalism Awards dinner held Wednesday, May 20 at The Chart House in Weehawken.

Published: May 29th, 4:17 AM

Rita Annan-Brady, lifestyles editor and former editor of The Progress, won second place for her editorial “Stopping Illegal Rentals” and third place in the Science, Health, Education, Medical writing for her two-part series on “RSD: The Worst Kind of Pain, Hope Is Out There.”

George Saliba, managing editor of New Jersey Business Magazine in Fairfield, took first place in Science, Health, Education, Medical for “HIV/AIDs Update” and second place in Feature writing for “Diversity in the Fortune 500.”

In the Electronic News Gathering Feature category, Collette Liddy, Nick Amabile, Professor John Yurko and Professor Robert Mann from Caldwell College won first place for “Academic Support Center.”

Liddy, Amabile and Yurko also received second place in the same category for “Jemima.”

Saliba serves as a trustee of the Garden State Journalists Association and Anthony Birritteri, editor-in-chief of New Jersey Business, is sergeant at arms.